How do you be positive about your body, when your body isn’t positive

No, no, I don’t need a Dove commercial self-esteem boost. I’m darn cute, smart, funny, and I’ve successfully kept a small person alive for nearly six years. I do good work, I have a roof, food, and plenty of blessings, and SHE even lets me rant on the internet every month.

But I still hate my body.

Why? Because I have a chronic illness, several actually, that force my body to turn traitor. The biggest one is narcolepsy which robs me of restful sleep. While I take meds, they cause panic attacks in large doses, so I take just enough to avoid sleeping while driving. Add asthma, allergies, and some “autoimmune thing” my doc is trying to pin down, and I spend a lot of time in bed.

Narcolepsy has reduced my world to work-home-bed-repeat. By 6 pm, I’m done. If I work out, eat a big meal, have my girly cycle, or get a sinus infection, I can be laid out for days. On these days, I must will my body for every leaden step; difficult when your classes are 7,000 steps apart (I got a Fitbit for Christmas). There are times when it feels like life as I knew it is over. Depression has a high co-morbidity with this illness, and I understand why.

In December, my sleep doc reminded me that the best we can do is manage symptoms. That echoes in my head when people say “let’s get together when you’re feeling better,” because I don’t know when that might be. I also have to carefully respond to the oceans of helpful advice like: “exercise gives you energy,” and “do you look at screens before bed?”

And,

“Have you tried paleo/gluten-free/vegan?”

And,

“You were okay yesterday, why are you tired today.”

And,

“When are you going to get that done?”

I do my utmost to accept these as intended concerns for my well being, but in these conversations, I struggle because saying anything remotely negative is scolded. “You have to think positively.”

There are days I don’t want to be positive, and that’s okay! Here’s my contribution to the topic of self-love.

Thing is, we are really into happy. Americans change the endings of foreign films, so they can have happy endings (and no subtitles). Amazon carries more than 14,000 books on being happy. As a culture, we’ve spent more than 9.6 million dollars on everything from self help books to yoga videos, all designed to increase our happiness.

As a society, we need to be more accepting of unhappy. Forcing us to smile when it hurts not only covers up chronic illness and feeds stigma, it’s also exhausting. I wish there was a one word response to “how are you today?” that somehow conveys this. On my bad days, when someone asks how I’m feeling I want to say, “today I’m fighting. I’m willing my body to do things it doesn’t want to. I’m hiding my exhaustion to make you comfortable. I’m conserving energy for my child, so when she remembers me, it won’t be as the person asleep in the bedroom. Today, I’m doing my best, just to do my best, and when I’m done, I’m going to go home, crash, and start fighting again tomorrow.” It’s easier to follow the social script and say, “I’m good. You?”

My body is a jerk. It is the thing I am trapped inside. It regularly fails me, and I’m not alone. My chronic fatiguers, my fibro folks, my depressed divas, my fellow narcos, my stalwart fighters. It’s okay to hate the body you’re fighting because we are more than our bodies. We are the bright, awesome selves within. So on those days you must fight, it’s okay to your flip off your reflection and say, “#*$&@) you, I’m doing it anyway.”

And on those days when you need to rest. When you decide that today is not a fighting day, it’s okay to be a hot mess. It’s okay to be frustrated, angry, and sure, a little hateful. You can love yourself without having to make friends with your body.

Today, I fought. I carried my daughter to the car. We got the family shopping done with no sanity loss, and I watched the season premiere of The Expanse. So, it’s been a decent day. Tomorrow, I’ll pay for the expansion of all that energy, but that’s a few hours off.

So, the only advice I have to offer is this. It’s easier to fight with someone. Make sure if you are in this battle, you reach out to people who get it. Feel free to email me if you wish. We all have to support each other. Try to train your closest people to get it too, even if it means an uncomfortable conversation. Self-advocacy is self-love, and if you are fighting today, know that I see you. I wish you spoons, peace, and rest.

Author: Lisamariepavia

Lisa Pavia-Higel is a St. Louis based writer, educator and performer. By day, she’s a mild mannered Communication and Media professor at a local community college and runs her own small jewelry company, Geekery Gal. By night, she’s a stage combat fighting, comic reading, critique writing, productivity advice giving mama. She loves trying things that she’s really not very good at, like sewing, painting and writing succinct biographies. She is indulged by her little geeklet Sofia and intrepid feminist, geeky husband Matthew. She’s too long winded for Twitter, but you can tweet to her at @geekerygal